On Wednesday, March 23 of this past week, the FDA finally approved Lutetium 177 PSMA 617 for treatment of PSMA (prostate specific membrane antigen) sensitive metastatic castrate resistant prostate cancer (mCRPC). The ligand, lutetium Lu 177 vipivotide tetraxetan, has a commercial name of Pluvicto, and is made by Advanced Accelerator Applications, a subsidiary of Novartis. Novartis is an AnCan sponsor – they have not asked us to make this post.
Pluvicto delivers the radionuclide agent lutetium to cells expressing PSMA . According to Dr. Jeremie Calais at UCLA, “The PSMA-targeted radioactive agent preferentially atttaches to cancerous cells, not the normal tissues”.
You can read the Novartis press release here, and an independent review from Prostate Cancer Foundation here.
The approval left a lot of open questions, several of which AnCan was able to answer when we spoke with AAA on Friday. There are a couple of quirks in the approval and availability.
Use of Pluvicto (Lu177 PSMA 617) is post-chemotherapy
Use requires a Ga68 PSMA 11 scan – not Pylarify. AAA received a companion approval for Locametz, a kit that makes that scan widely available. It is not clear if a previous Pylarify scan will be grandfathered
There is no Medicare pricing agreement as yet
All the managed access trial sites have now been closed. Each hospital will now have to approve local use itself – Hopkins, by way of example. has indicated this could take months. AAA has suggested the following sites may be ready to treat immediately:
University of Chicago
Tulane
Mount Sinai, NYC
UCLA
In the interim AAA Patient Connect is geared up to provide financial assistance. It can be reached via the number on https://pluvicto.com 844 638 7222
For a good indicator as to where Pluvicto could soon be available, you can check the sites where AAA’s Lutathera, a lutetium treatment for certain neuroendocrine cancers, is available. https://www.lutathera.com/find-a-treatment-site/
In March, we had Dr. Pamela Munster(UCSF Helen Diller Family Comprehensive Cancer Center, and AnCan Advisory Board Member) give a talk to our AS group titled “Novel Strategies to Treat Prostate Cancer”
There were discussions about an exciting new treatment for Prostate Cancer in the works, plus hear from the AS community about anxiety, finding the right medical team, and how relationships impact stress levels in this special presentation.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Feb 21, 2022
AnCan was honored by the GU ASCO 2022 Conference last week, who accepted our abstract and poster. You can see just how effective our support groups (and recordings!) truly are: https://ancan.org/ancan-recognized-by…
Next week’s meeting will be on Tue, March 1. That’s because Feb and March mess up our Meeting Calendar, so we have to make adjustments to avoid consecutive nights!
All AnCan’s groups are free and drop-in – join us in person sometime! You can find out more about this and our other 10 monthly prostate cancer groups at https://ancan.org/prostate-cancer/ To sign up to receive a weekly Reminder/Newsletter for this Group or others, go to https://ancan.org/contact-us/
Editor’s Pick: Both new men this week are under 60; listen to their stories! (rd)
Topics Discussed
Younger man with challenging disease tries to find best Tx; lung nodules pose issue for another younger man; side effects of Lu177 PSMA; germline vs Somatic testing and teh PROMISE trial (link below); IHT brings some relief; survival stats; is joint pain a comorbidity of ADT?; bone density; low T? Get a complete testosterone work up.
Chat Log
George Rovder Arlington VA (to Everyone): 6:12 PM: rd@ancan.org
John Ivory (to Everyone): 6:34 PM: PUBLIC SERVICE ANNOUNCEMENT: Our guest this month for Solo Arts Heal has played a role that will be familiar to many of you: a family caregiver. Barbara Dyskant cared for a former member of this group whom some of you might remember, her husband Barry Miller (who unfortunately passed away in 2020). Earlier, she cared for her daughter who survived two years on chemo for leukemia (now undetectable). She’ll be playing original songs; Rick Davis will host. Please join us at 10:30 p.m. ET/7:30 p.m. PT https://themarsh.org/soloartsheal/
Paul Freda Florida (Private): 6:34 PM: Ric Tall Allen has a new post that says there is data that Vitamin D6 can CAUSE make cancer MORE likely. Very unusual. You might want to check that out. … JFYI … Saw it on Healthunlocked …… “Actually, those toxicities are quite common. High Vitamin D pulls calcium out of bones and causes osteoporosis. We just saw, in the D-Health trial, there was a 24% increase in cancer among those taking high amounts of Vitamin D for years.”
AnCan – rick (to Paul Freda Florida): 6:39 PM: D3 or B6 Paul
Paul Freda Florida (Private): 6:41 PM: I believe it said just Vitamin D. He added that some dairy and a bit of sunlight is all you need to avoid ricketts.
John Ivory (to Organizer(s) Only): 6:41 PM: https://www.inova.org/doctors/jeanny-b-aragon-ching-md
Paul Freda Florida (Private): 6:43 PM: Like most things, there are limits. For example, I believe my kidney stone last year was due to my excessive consumption of Vitamin C. I follow Dr Linus Pawling’s advice. Just learned about that danger recently.
AnCan – rick (to Paul Freda Florida): 6:43 PM: Not really new news, Paul. You have to regulate your D intake to lep it at the right leve. I don’t read Health Unlocked. Not sure thre is anything here that is new to us …… check with Len. Suggest you bring it up …
Paul Freda Florida (Private): 6:45 PM: Reluctant to put a scare in to everyone with so little information. One study.
AnCan – rick (to Paul Freda Florida): 6:49 PM: allow the moderators to decide ….
AnCan – rick (to Everyone): 6:59 PM: Sean Collins at Georgetown
George Rovder Arlington VA (to Everyone): 7:00 PM: Dr. Sean Collins Website:
George Rovder Arlington VA (to Everyone): 7:01 PM: https://www.medstarhealth.org/doctors/sean-philip-collins-md-phd
Frank Fabish (to Everyone): 7:02 PM: Guys I need to cut out early. Early appt tomorrow
Pat Martin (to Everyone): 7:35 PM: How long has Sylvester been fighting the beast?
Len Sierra (to Everyone): 7:37 PM: Sylvester had low risk PCa and I believe he is cured.
Sylvester Mann (to Everyone): 7:37 PM: twenty-two years.
AnCan – rick (to Pat Martin): 7:37 PM: Sylvester nailed his disease with RT on recurrence and has durable remission
Len Sierra (to Everyone): 7:38 PM: Yay Sylvester!!
John Ivory (to Organizer(s) Only): 7:39 PM: If you haven’t exercised in a while, you’re also likely to have joint pain until you’re stretched out a bit
John Ivory (to Everyone): 7:39 PM: If you haven’t exercised in a while, you’re also likely to have joint pain until you’re stretched out a bit
John Ivory (to Organizer(s) Only): 7:44 PM: Wouldn’t Men Speaking Freely be good for Tony The Boss?
John Ivory (to Everyone): 7:53 PM: https://ancan.org/men-speaking-freely/https://ancan.org/men-speaking-freely/
Rich Jackson (to Everyone): 7:54 PM: Next ‘Speaking Freely’ will be March 17, 8pm EST. To connect, use the same link as got you here. Non-Technical call, men only, any serious disease (mostly prostate cancer men show up).
Rich Jackson (to Everyone): 7:56 PM: Thank you John Ivory.
Pat Martin (to Everyone): 7:57 PM: Doesn’t BAT encourage testosterone in cycle?
Chris Carrino (to Everyone): 7:58 PM: Any one try the new Orgovyx ADT? First timer. I’ll be up and running next week with video/audio
John Ivory (to Everyone): 7:58 PM: Sorry Rich–didn’t see you among all the faces here–you would have better described your meeting!
AnCan – rick (to Everyone): 7:59 PM: Chris – we have several men on Orgovyx tonight
John Ivory (to Everyone): 7:59 PM: @Chris Carrino–I’ve been on Orgovyx for a year. Has worked as well as leuprolide and no painful injections
Joe Gallo (to Everyone): 7:59 PM: Hi Chris, I started on Orgovyx last year.
Peter Kafka (to Everyone): 8:00 PM: A number of us have tried and still using Orgovyx. Join in at the next meeting and discuss. Next meeting will be Tuesday, March 1st at 6 pm Eastern time.
This article by Howard Wolinsky summarizes a study by NYU Langone Health in New York City. The study is about the disproportionate prostate cancer representation in LatinX and Black communities in social media presence. Stacy Loeb, leader of the study and urologist at NYU Langone Health and Manhattan Veterans Affairs, stated “Online information is increasingly used by patients and their families but falls short in terms of quality, readability, and diversity of representation.”
Howard Wolinsky is an AnCan Moderator and Advisory Board Member. Thank you, Howard, for spotlighting this important topic of minority representation in the prostate cancer community.
The AnCan team thanks Dr. John Antonucci for submitting his opinions on hospice and palliative care in end-of-life considerations. Dr. John is a retired clinical, academic and research psychiatrist. His most recent gig before hanging up the white coat was at the VA providing care in the addiction clinics. He is also a peer in our High Risk/Recurrent/Advanced Prostate Cancer Group.
Our discussion group (High Risk/Advance Prostate Cancer) hasn’t talked much about end-of-life care or making decisions about things like resuscitation status, stopping treatment or hospice care. But the topic has come up lately, and since we have Dr. BJ Miller, co-author of a relevant book and a palliative care physician, on the AnCan Advisory Board, it is appropriate to take a first or second look at his chapter.
The authors start by defining these often-confused terms: Hospice provides end-of-life care with the goal of comfort rather than trying to cure a disease. It is actually a sub-section of palliative care. Palliative care is treatments added-on to regular medical care, at any stage of serious illness, and is intended to improve the quality of our physical, spiritual and emotional lives.
The authors explain what qualifies a patient for Hospice care. Anyone who has a terminal illness and is ready to stop treatment aimed at curing it, and who is expected to live 6 months or less, may qualify. A multidisciplinary team is then assigned and the treatments are brought to us, in our own homes if desired. (There are also residential hospices but these are not as common as often assumed.) Health insurance policies, including Medicare, cover Hospice. There are useful tips in the book on finding and choosing Hospice providers, and a section for when the hospice is not performing well. The authors encourage us to not to wait until our last few weeks to get this process going.
Palliative care is now its own medical specialty. Again, the idea is to make our lives nicer by helping to reduce a wide variety of suffering, including pain, anxiety, drug side effects, depression, fear, nausea, and spiritual pain. Most of this type of care is delivered in the hospital or outpatient clinic. Palliative care is integrated into our existing treatment plan, rather than being comprehensive like Hospice. Health insurance will generally cover these services although it might leave us with co-pays and deductibles. And again, the authors urge us to start early; there is no requirement that we be close to the end, only that we have a serious illness.
The overall effect on me of reading this chapter was not only education but also reassurance. Not only reassurance that we deserve comfort and don’t have to hide our suffering, but also that Someone will be there to care about our suffering and try to help. Quite comforting, I believe.
